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1.  Next of kin’s experiences of involvement during involuntary hospitalisation and coercion 
BMC Medical Ethics  2016;17:76.
Background
Norway has extensive and detailed legal requirements and guidelines concerning involvement of next of kin (NOK) during involuntary hospital treatment of seriously mentally ill patients. However, we have little knowledge about what happens in practice. This study explores NOK’s views and experiences of involvement during involuntary hospitalisation in Norway.
Methods
We performed qualitative interviews-focus groups and individual-with 36 adult NOK to adults and adolescents who had been involuntarily admitted once or several times. The semi-structured interview guide included questions on experiences with and views on involvement during serious mental illness and coercion.
Results
Most of the NOK were heavily involved in the patient’s life and illness. Their conceptions of involvement during mental illness and coercion, included many important aspects adding to the traditional focus on substitute decision-making. The overall impression was, with a few exceptions, that the NOK had experienced lack of involvement or had negative experiences as NOK in their encounters with the health services. Not being seen and acknowledged as important caregivers and co sufferers were experienced as offensive and could add to their feelings of guilt. Lack of involvement had as a consequence that vital patient information which the NOK possessed was not shared with the patient’s therapists.
Conclusions
Despite public initiatives to improve the involvement of NOK, the NOK in our study felt neglected, unappreciated and dismissed. The paper discusses possible reasons for the gap between public policies and practice which deserve more attention: 1. A strong and not always correct focus on legal matters. 2. Little emphasis on the role of NOK in professional ethics. 3. The organisation of health services and resource constraints. 4. A conservative culture regarding the role of next of kin in mental health care. Acknowledging these reasons may be helpful to understand deficient involvement of the NOK in voluntary mental health services.
Electronic supplementary material
The online version of this article (doi:10.1186/s12910-016-0159-4) contains supplementary material, which is available to authorized users.
doi:10.1186/s12910-016-0159-4
PMCID: PMC5121949  PMID: 27881139
Ethics in clinical practice; Law; Confidentiality; Qualitative
2.  The Norwegian national project for ethics support in community health and care services 
BMC Medical Ethics  2016;17:70.
Background
Internationally, clinical ethics support has yet to be implemented systematically in community health and care services. A large-scale Norwegian project (2007–2015) attempted to increase ethical competence in community services through facilitating the implementation of ethics support activities in 241 Norwegian municipalities. The article describes the ethics project and the ethics activities that ensued.
Methods
The article first gives an account of the Norwegian ethics project. Then the results of two online questionnaires are reported, characterizing the scope, activities and organization of the ethics activities in the Norwegian municipalities and the ethical topics addressed.
Results
One hundred and thirty-seven municipal contact persons answered the first survey (55 % response rate), whereas 217 ethics facilitators from 48 municipalities responded to the second (33 % response rate). The Norwegian ethics project is vast in scope, yet has focused on some institutions and professions (e.g., nursing homes, home-based care; nurses, nurses’ aides, unskilled workers) whilst seldom reaching others (e.g., child and adolescent health care; physicians). Patients and next of kin were very seldom involved. Through the ethics project employees discussed many important ethical challenges, in particular related to patient autonomy, competence to consent, and cooperation with next of kin. The “ethics reflection group” was the most common venue for ethics deliberation.
Conclusions
The Norwegian project is the first of its kind and scope, and other countries may learn from the Norwegian experiences. Professionals have discussed central ethical dilemmas, the handling of which arguably makes a difference for patients/users and service quality. The study indicates that large (national) scale implementation of CES structures for the municipal health and care services is complex, yet feasible.
Electronic supplementary material
The online version of this article (doi:10.1186/s12910-016-0158-5) contains supplementary material, which is available to authorized users.
doi:10.1186/s12910-016-0158-5
PMCID: PMC5101716  PMID: 27825344
Clinical ethics; Clinical ethics support; Community care; Ethics reflection
3.  How do nursing home doctors involve patients and next of kin in end-of-life decisions? A qualitative study from Norway 
BMC Medical Ethics  2016;17:5.
Background
Ethically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors’ descriptions of how they include the patient and next of kin in end-of-life decisions.
Methods
We performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation.
Results
The doctors described large variations in attitudes and practices in all aspects of end-of-life decisions. In conflict situations, many doctors were more concerned about the opinion of next of kin than ensuring the patient’s best interest.
Conclusions
Many end-of-life decisions appear arbitrary or influenced by factors independent of the individual patient’s values and interests and are not based on systematic ethical reflections. To protect patient autonomy in nursing homes, stronger emphasis on legal and ethical knowledge among nursing home doctors is needed.
doi:10.1186/s12910-016-0088-2
PMCID: PMC4714479  PMID: 26769024
Nursing home; End-of-life decisions; Life prolonging treatment; Advance care planning; Decision making capacity; Patient rights; Next of kin; Ethics; Justice
4.  End-of-life care communications and shared decision-making in Norwegian nursing homes - experiences and perspectives of patients and relatives 
BMC Geriatrics  2015;15:103.
Background
Involving nursing home patients and their relatives in end-of-life care conversations and treatment decisions has recently gained increased importance in several Western countries. However, there is little knowledge about how the patients themselves and their next-of-kin look upon involvement in end-of-life care decisions. The purpose of this paper is to explore nursing home patients’ and next-of-kin’s experiences with- and perspectives on end-of-life care conversations, information and shared decision-making.
Methods
The study has a qualitative and explorative design, based on a combination of individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 33 relatives. The data was analysed applying a “bricolage” approach”. Participation was based on informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics.
Results
Few patients and relatives had participated in conversations about end-of-life care. Most relatives wanted such conversations, while the patients’ opinions varied. With some exceptions, patients and relatives wanted to be informed about the patient’s health condition. The majority wanted to be involved in the decision-making process, but leave the final decisions to the health professionals. Among the patients, the opinion varied; some patients wanted to leave the decisions more or less completely to the nursing home staff. Conversations about end-of-life care issues are emotionally challenging, and very few patients had discussed these questions with their family. The relatives’ opinions of the patient’s preferences were mainly based on assumptions; they had seldom talked about this explicitly. Both patients and relatives wanted the staff to raise these questions.
Conclusion
Nursing home staff should initiate conversations about preferences for end-of-life care, assisting patients and relatives in talking about these issues, while at the same time being sensitive to the diversity in opinions and the timing for such conversations. As the popularity of advance care planning increases in many Western countries, discussions of patients’ and relatives’ perspectives will be of great interest to a broader audience.
doi:10.1186/s12877-015-0096-y
PMCID: PMC4544816  PMID: 26286070
Nursing homes; End-of-life care communication; Shared decision-making; Qualitative study
5.  “It scares me to know that we might not have been there!”: a qualitative study into the experiences of parents of seriously ill children participating in ethical case discussions 
BMC Medical Ethics  2015;16:40.
Background
All hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions.
Methods
Ten next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care personnel who could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide.
Results
All next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child’s impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead.
All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much.
Conclusions
None of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC’s role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion.
doi:10.1186/s12910-015-0028-6
PMCID: PMC4464619  PMID: 26048681
Ethics consultation; Committee; End-of-life; Parents; Discussion
6.  Courteous but not curious: how doctors' politeness masks their existential neglect. A qualitative study of video-recorded patient consultations 
Journal of Medical Ethics  2011;37(11):650-654.
Objective
To study how doctors care for their patients, both medically and as fellow humans, through observing their conduct in patient–doctor encounters.
Design
Qualitative study in which 101 videotaped consultations were observed and analysed using a Grounded Theory approach, generating explanatory categories through a hermeneutical analysis of the taped consultations.
Setting
A 500-bed general teaching hospital in Norway.
Participants
71 doctors working in clinical non-psychiatric departments and their patients.
Results
The doctors were concerned about their patients' health and how their medical knowledge could be of service. This medical focus often over-rode other important aspects of the consultations, especially existential elements. The doctors actively directed the focus away from their patients' existential concerns onto medical facts and rarely addressed the personal aspects of a patient's condition, treating them in a biomechanical manner. At the same time, however, the doctors attended to their patients with courteousness, displaying a polite and friendly attitude and emphasising the relationship between them.
Conclusions
The study suggests that the main failing of patient–doctor encounters is not a lack of courteous manners, but the moral offence patients experience when existential concerns are ignored. Improving doctors' social and communication skills cannot resolve this moral problem, which appears to be intrinsically bound to modern medical practice. Acknowledging this moral offence would, however, be the first step towards minimising the effects thereof.
doi:10.1136/jme.2010.041988
PMCID: PMC3198010  PMID: 21610269
Applied and professional ethics; philosophy of medicine; professional—professional relationship
7.  Choice is not the issue. The misrepresentation of healthcare in bioethical discourse 
Journal of Medical Ethics  2010;37(4):212-215.
The principle of respect for autonomy has shaped much of the bioethics' discourse over the last 50 years, and is now most commonly used in the meaning of respecting autonomous choice. This is probably related to the influential concept of informed consent, which originated in research ethics and was soon also applied to the field of clinical medicine. But while available choices in medical research are well defined, this is rarely the case in healthcare. Consideration of ordinary medical practice reveals that the focus on patient choice does not properly grasp the moral aspects involved in healthcare. Medical decisions are often portrayed as if doctors and patients in confidence confront specific decisions about examinations or treatment, yet the reality often involves many different participants, with decisions being made over time and space. Indeed, most of the decisions are never even presented to patients, as it would be unethical to suggest something that is not medically justifiable. The options patients do confront are somewhat arbitrarily constructed within the narrow framework of both what is deemed to be medically appropriate and how the healthcare system is organised practically. While the autonomy discourse has proven valuable, a failure to distinguish between the fields of medical research and clinical medicine has generated a focus on patient choice that does not reflect what is really at stake in healthcare settings. This is alarming, because the current discourse misrepresents medical practice in a way that actually contributes to bioethical self-delusion.
doi:10.1136/jme.2010.039172
PMCID: PMC3063455  PMID: 21131609
Personal autonomy; bioethics; medical ethics; professional practice; delivery of healthcare; applied and professional ethics; philosophy of medicine; informed consent
8.  Clinical essentialising: a qualitative study of doctors’ medical and moral practice 
While certain substantial moral dilemmas in health care have been given much attention, like abortion, euthanasia or gene testing, doctors rarely reflect on the moral implications of their daily clinical work. Yet, with its aim to help patients and relieve suffering, medicine is replete with moral decisions. In this qualitative study we analyse how doctors handle the moral aspects of everyday clinical practice. About one hundred consultations were observed, and interviews conducted with fifteen clinical doctors from different practices. It turned out that the doctors’ approach to clinical cases followed a rather strict pattern across specialities, which implied transforming patients’ diverse concerns into specific medical questions through a process of ‘essentialising’: Doctors broke the patient’s story down, concretised the patient’s complaints and categorised the symptoms into a medical sense. Patients’ existential meanings were removed, and the focus placed on the patients’ functioning. By essentialising, doctors were able to handle a complex and ambiguous reality, and establish a medically relevant problem. However, the process involved a moral as well as a practical simplification. Overlooking existential meanings and focusing on purely functional aspects of patients was an integral part of clinical practice and not an individual flaw. The study thus questions the value of addressing doctors’ conscious moral evaluations. Yet doctors should be aware that their daily clinical work systematically emphasises beneficence at the expense of others—that might be more important to the patient.
doi:10.1007/s11019-009-9193-z
PMCID: PMC2848348  PMID: 20336384
Beneficence; Clinical decision-making; Dehumanising; Empirical research; Grounded theory; Medical ethics; Moral practice; Professional values; Qualitative
9.  Unhappy doctors? A longitudinal study of life and job satisfaction among Norwegian doctors 1994 – 2002 
Background
General opinion is that doctors are increasingly dissatisfied with their job, but few longitudinal studies exist. This study has been conducted to investigate a possible decline in professional and personal satisfaction among doctors by the turn of the century.
Methods
We have done a survey among a representative sample of 1 174 Norwegian doctors in 2002 (response rate 73 %) and compared the findings with answers to the same questions by (most of) the same doctors in 1994 and 2000. The main outcome measures were self reported levels of life satisfaction and job satisfaction according to the Job Satisfaction Scale (JSS).
Results
Most Norwegian doctors are happy. They reported an average life satisfaction of 5.21 in 1994 and 5.32 in 2002 on a scale from 1 (extremely dissatisfied) to 7 (extremely satisfied). Half of the respondents reported a very high level of general life satisfaction (a score of 6 or 7) while only one third said they would have reported this high level of satisfaction five years ago. The doctors thought that they had a higher level of job satisfaction than other comparable professional groups. The job satisfaction scale among the same doctors showed a significant increase from 1994 to 2002. Anaesthesiologists and internists reported a lower and psychiatrists and primary care doctors reported a higher level of job satisfaction than the average.
Conclusion
Norwegian doctors seem to have enjoyed an increasing level of life and job satisfaction rather than a decline over the last decade. This challenges the general impression of unhappy doctors as a general and worldwide phenomenon.
doi:10.1186/1472-6963-5-44
PMCID: PMC1177945  PMID: 15943859

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